I haven't written anything in about 15 months. Pre-COVID. Pre-SATs, pre-college classes and postponed on-campus visits. Today is the first day of Heart Month, and per usual, it makes me think.
Josh is just more than halfway through his junior year of high school. Can you believe that? I started this blog in October 2014 - right around his 10th birthday.
Since that time, his interests have changed -- from Fort Nite and baseball to curfews, colleges and class rankings.
My relationship with Josh has changed too -- we are close in our own, newer ways. He confides in me about school and the pressures he's feeling. I try to help guide him through the difficulties that most teens face: making good choices, the ups and downs of relationships and the school stress he puts on himself.
It's hard. As a mom, I so very badly want to squeeze him and fix his problems, but I know I can't. So now I show him affection with guidance, the time we spend together and anything else I can grab onto.
It's been eerily quiet on the CHD front, too. I'm not used to it. Last summer, Josh's cardiologist -- for the first time ever -- told us we could go a year in between visits. It's great news, but I don't know how to handle it.
We go back in June for our regular visit, plus a stress test and CT scan. All protocol, I'm told. We'll see. I'm still hopeful that we get to summer 2022 before we have any decisions to make.
That said, these visits and conversations have changed as well. Now his talks with his doctor are more educated. More sophisticated. Josh knows his body so well. He speaks about his heart, the structure and how it works as if he's already a doctor.
They discuss college and medical schools, and shadowing opportunities (post-COVID). Josh asks him about research and how to get the right experience. He's so focused. There's never a point when I'm not in awe because as much as he and I talk about his future, this conversation is different - and he doesn't have it with us. He doesn't remember a time in his life when his cardiologist wasn't in it. He trusts him, literally, with his life.
And then there's the part that brings me back to reality. The part where he tells us that once Josh decides on a college, that he'll find us a local cardiologist "just in case." And there it is again. The reminder that he's saddled with this forever. That he'll never know a life that doesn't include cardiologist visits and possible procedures and even surgeries.
I know I should be grateful for everything. And I am. Despite all he's been through, he's healthy right now. Others have not been as fortunate. I know that. Still, there's always a small, sad spot in the back of my mind.
And that's why I don't know how to handle today's quiet - because you know it's not forever; just dormant enough to lull you into forgetting. But we know better; there's no cure.
As we walk through Heart Month, Josh continues to fight and advocate. In fact, tomorrow, he's speaking to several hundred high school students about his experience. He gave a similar talk at the start of the school year to close to 1,000 students throughout our county.
Despite my sometimes-somber tone, I am so incredibly grateful for everything each and every day with him. There's not a day that goes by that I'm not bursting with pride at the man he's becoming. It won't be long now.
I recently came upon a new breed a parent: one who says her child “has a heart condition.” Naturally, like most mothers of children with congenital heart defects, I tried to ask what her child’s issues were, wanting to offer support.
Her answers were vague at best: “heart conditions.” That was my first red flag. That's not how a heart mom speaks, one who uses acronyms and vernacular that's almost its own language.
I tried to give her the benefit of the doubt; perhaps it was sensitive and she didn’t want to discuss it. However, as I've gotten to know her, I've discovered that most parts of her life are an open book – as are the other ailments from which her child suffers.
It continued to bother me as she began to more frequently compare our children, almost teasing and trivializing what he’s been through – “They could date and go to the same cardiologist.” THAT’S NOT FUNNY.
Parents of CHD children know: you don’t compare. Each child is different; they’ve been through enough already. It’s not a race or a contest to “win” how many issues your child has or how many open heart surgeries they’ve survived.
THERE IS NO PRIZE.
After some research, I discovered that treatment for her child’s “condition” was getting regular exercise and drinking water. While I was thankful for her child’s sake that that’s all it was, I wasn’t relieved. I was furious. She's a fraud.
I tell this story to ask this: Why? Why would anyone ever pretend to walk in these shoes? I wouldn’t wish my son’s history or medical future on anyone. Her words are lies; half-truths at best.
I’m disgusted. It’s an insult to my son and so many other children to talk about what they’ve been through as if your child has been through the same. YOU HAVE NO CLUE.
Do you know what the surgeries have been like? Not knowing if your child would survive – FOUR TIMES. In some cases, not knowing why they couldn’t find the problem.
The sleepless nights. The pain he suffered. The healing – both physical and mental -- he needed to fight through.
Do you know what it’s like to give your child to surgeons and know that they will literally hold his heart in their hands? And all you can do is trust them.
I have dealt with so many people over these past 15 years who have said some utterly ridiculous and insensitive things to me. It’s shameful.
But this? This is different.
I know I should let it go, but I can’t put this out of my mind. I can’t understand why anyone would ever say these things. Compare themselves to him or other children like him.
We have always worked hard to make sure Josh understands that he’s not a victim. Life does not owe him anything; he works for what he gets. He lives a “normal” life -- except when it’s not.
I know I’ll sleep better at night if I can just put this away and chalk it up to ignorance. But it’s hard.
The time is coming. When I will confront her lack of awareness and downright stupidity. I don’t think she realizes yet that she’s woken mama bear.
I’m a Con Artist
I wanted to write something for the start of CHD Awareness Week. I thought I could really do it. But, I’m still at a loss. I haven’t written in months. Lots and lots of months. Maybe it’s because I’ve been all cried out. Wrung out. Tired out. Burnt out.
In the past, I’ve written. I’ve written a lot. It was my salvation; it was cathartic. I’ve voiced my concerns, thoughts and fears. But this time, I just don’t have it. I still don’t know what to say.
It’s taken me all these months – close to three – since Josh's surgery to find the words. And even now, it’s hard. I don’t know where to start. There’s so much I want to say, but I can’t get there. I’m still wrestling with my feelings. I still don’t have clarity. And that’s hard.
People think because Josh’s surgery is over that we’re all just fine now. Almost like it never happened. And that’s OK. I don’t want Josh to be considered fragile or broken; he’s not. Far from it.
But, just for the record, I’m not always fine. I have triggers. And they are everywhere. The immediate anger is gone, but it’s always there just below the surface. It sits dormant with the mental and emotional scars that I will have for all of my days.
People have told me I’m strong. I’m not. I’m a con artist. I’m good at faking the strength. I’m just a regular mom who happens to be in complete awe of her son. How could I not be? If there is any strength, it’s a byproduct of watching him.
I get in my own head quite a bit. Sometimes I think people don’t realize how serious and severe Josh’s surgery was because of the way he fights and how he doesn’t let this crappy hand deter him. They see the young man in front of them now. The one whose restrictions are gone. The kid who’s back in a baseball uniform and cracking dirty jokes with his friends.
It’s easy for others to forget that it was just 10 weeks ago when I got the update, “We are now on bypass.” Translation: My child was living on a machine. I mean, HOLY CRAP -- a machine was literally the only thing keeping my child alive.
They don't remember the setbacks. The internal bleeding. His physical pain. His depression. They don't know how scared we were that he was giving up. ... And then one day, he chose to fight.
These are some of the things that crawl into my head. It’s no wonder I’m still struggling.
Maybe that’s the point of this post. That I’m not fine. I’m never fine.
This is supposed to be about CHD awareness, and it is. This is just another aspect of it that most people don’t know about or talk about – the PTSD parents experience.
For us, it’s not just one week of “awareness.” It’s life. This path winds and weaves with plenty of ups and downs. The road never ends.
In time, I will get my writing mojo back. And I will advocate. I will haunt. I will strive to be the strong mom I’ve convinced everyone I am. I will be unrelenting.
And I know this to be because my motivation is the amazing young man I see every day. Time will never heal Josh’s heart, but it will -- at least temporarily -- repair my wounds.
Don't Talk to Me About His 'Journey'
In just 24 days, Josh will undergo his fourth open heart surgery operation. I thought I was prepared. After all, we've been waiting for this to happen for two years. How could I not be ready? "You expected this, right?" As someone said to me earlier today.
Sure, I expected it. But you also expect your parents to pass away some day, right? But it's still difficult to deal with, right? It still hurts, right? Right?!?!?
Does it sound like I'm shouting? If it does, it's because I am. I've been sulking since yesterday. But as this Tuesday has crawled by, my sadness has morphed into anger. I appreciate every kind word, please know that. But if you are going to tell me "he can handle it" or "everyone goes through something," I will tell you to f*** off. Just f*** off.
No disrespect. None. Not as you sit there with perfectly healthy children. Do I sound resentful? Probably - because in this moment I am. It's not personal; it's jealousy.
I HATE that you think he can handle it. Why should HE have to? Why does this have to be his "journey?" This is not a choice. He didn't decide to take this path. This is not the left or right. Red or blue. This is life and death. We did not make this CHOICE. There is NO CHOICE.
Yet, I still want to pack him up in my car and run away. Drive away. Fly away. I want to wish this away. I want to take his place so he never has to go through this again.
I want to scream. I want to break glass. I want to kick down doors. I want to crawl out of my own skin.
But instead, I will prepare: Contact his school - check. Request all of the necessary surgical records - check. Make lists - already started.
Despite my anger, I can still see very clearly. I know what's most important - my son and the way I handle this in front of him. So, as I've always done, I'll smile and laugh and nag him to brush his teeth. I'll harp on making sure he's studied enough for his math test. And we'll shuffle around town from baseball practice to games to lessons and back again.
Because THAT is his journey - being a 12-year-old boy. Going to middle school. Hanging out with his friends.
His heart history DOES NOT define him. It's not his legacy. He is smart, articulate, loving and loyal. He is the best son you could ever wish for. THAT is who he is.
And Just Like That, It's Time
t's 1 AM and I'm wide awake. It's partly due to the fact that this is the only time I can be completely honest with myself and admit that the haze of sadness I've been walking around in for two days hasn't gone away. We've finally heard the words that we'd thought we were prepared for: "It's time."
Sure, it's easy to occupy your time and push the sadness down, but it's still there. Just waiting for Josh to go to bed. When the house quiets and the vivid pictures of what you know is coming creep back to the surface.
Logically, I know this is inevitable. Yet the knowing it and the hearing the actual words are two completely different things. Even after what we've been through, it's still a shot to the gut.
There really are no words to make it better. There's nothing we can do. And there's certainly no "getting used to it" like some rather insensitive and soulless people have said to me.
So, in mid-December (our probable date), we will take our son to the hospital and he'll have open heart surgery again -- his fourth in 12 years.
We will trust the surgeons with his life, literally, in their hands. We will trust the nurses who care for him. Because what else can we do in such a powerless and helpless situation? And that's where some of the fear comes from -- the inability to protect your child. It makes my skin crawl.
The news also brings back every vivid memory; it comes right to the surface and seems fresh again. Like little photos and videos on my brain:
The sending him off with the doctors and having to trust them. The deafening silence as we wait and wait to hear he's made it out of surgery. The running as fast as I possibly can to get to him. I need to see him with my own eyes to know he's breathing,
And then you stop.
Because you ran into a room where your son is intubated and connected to a dozen or so tubes, wires and machines. And the air suddenly leaves the room. Because even though you remembered this, you've somehow also forgotten how shocking it really is. That it is your child laying there. The one you'd take a bullet for; jump in front of a bus for; have open heart surgery for. The one you'd die for.
Yet, he's stuck with this burden. He doesn't deserve it. He shouldn't have to deal with it because "he can handle it."
And he's asleep because his small body needs medication to cope with the pain. You just want to talk to him. To hear his voice. To hug and hold him. To let him know you're there and will protect him.
But can you, really? This is the plight of a parent like me. At the end of the day, the most you can do is find the best doctors for him, but even still, it never feels like it's enough.
And I want to scream. I have screamed. And I've cried. And then I've been happy because he'll never see this side of me. The vulnerable mom who so very desperately wants to magically wish it away.
People have asked me how I stay strong for him and keep it together. And the truth of the matter is, I'm nothing special other than a mom trying her best to protect her son. That means never showing him the worry or fear in my eyes. It's not even a thought. It's just what you do.
Moms know who they have to be and when. Soon enough, there will be a hospital room for my son. It will be 1 AM and I'll be awake. And then I'll be able to cry.
When You Don't Have Control
Hello there. It's Mother's Day today, and since about 4 PM, my anxiety has been at Def-con 12.
It hit me a short time ago that Josh heads back to the cardiologist in about 36 hours. And it's making me crazy.
From the outside looking in, you'd never know I was feeling this way. I keep it deeply hidden -- especially from Josh.
We do this song and dance every six months. They initially told us he'd be lucky to get to 10 years old before his next surgery; he'll be 12 this fall.
So, it feels like we are perpetually floating in purgatory. And to be completely honest, I'm tired. I'm tired of the not knowing when his number's going to be called. I'm tired of worrying that within a short time frame he could be back on the operating table. I'm at my breaking point. I want to scream. I want to pull my hair out. It's making me itch in my own skin.
It makes me crazy to think that no matter how much I want to protect him from this, I can't. Regardless of the "when," it's going to happen, and we can't make sure he's OK. We can't be his protectors. We have no control. We are helpless.
Can you imagine that? As a parent, being so completely and utterly powerless?
As parents, it's in our DNA to think of our kids first. To shield them from the dangers of life.
And I can't.
Maybe that's where my anxiety comes from. To know that others will decide when it's time for Josh to go into the cold operating room -- alone -- with his heart and life literally in their hands. I get sick just thinking about it.
I'm at the point where I sometimes just want to get it over with so he can live his life for awhile without having to worry. Because it will happen. And I can't stop it. I can't protect him.
The best we can do is find the best doctors we can and hand our trust and his body over to them. And while I know logically that it's the only power we do have, it does not make me rest easy. It does not take away the fear.
I thought that as life went on, I'd gain perspective or be better equipped to handle this. I know the drill. I know what's to come. But I'm beginning to think that instead of that making it easier, it's having the opposite effect.
I do know what's to come. Assuming his surgery is successful, I know what it will be like in the ICU. I know how frightened he'll be and how much he'll cry when he finally does wake up. I know the pain he'll be in and how he'll cry out for me in the middle of the night because his body is screaming. How he'll be hooked up to 50 different machines that all have their own horrible sounds and flashing lights. And I hate how I know what they are and what they mean.
I have so many different emotions. My anxiety is getting the best of me, because every six months, we think "it's time." And eventually, it will be. And I continue to be helpless.
How Could I Be More Thankful?
Well, it's been a few months since I've posted here. Quite frankly, things have been good and we've been focusing on other things besides Josh's CHDs. He's started middle school, had a birthday, and is obsessed with friends, baseball, videogames and Instagram. He's a pretty normal 11-year-old.
And that's the way we like it.
Thanksgiving is tomorrow, as you know. I love this time of year because things slow down a bit and I get to spend more time with my little family. Our kids are growing up so very quickly. I mean, that is so clear to me these days.
I am feeling particularly thankful right now when it comes to Josh's CHD issues as well. Not because there's now some magical cure, but because in this moment, he's fine. We go back to the doctor in about a month. It will be our first time going since he had an MRI this summer. I am hoping his numbers will be the same, but I know that's probably a bit more of a fantasy than reality. But in this moment, on this day, I am resting easy; I know he's safe.
I am also thankful because I know it could be so much worse. We recently met another CHD family. They were wonderful. The boy - 9, I believe - has been through just as much as Josh, but his daily life is a bit different. He's on meds, has a less stable immune system and his future is not so clear. I immediately felt grateful, but also guilty.
Each CHD survivor's story is different. I've met many and I know that. Maybe it's guilt because although my child's history was terrifying and dangerous, and his path forward is not safe or easy, his chances of a normal, healthy life are higher than that of other survivors.
Being the parent of a CHD survivor is difficult to explain. It's like being a member of some weird, awful club. You can just look at each other and you know. You know the pain, the worry. You know how they sat and waited. You know the helplessness.
For me, there's always this inner battle between guilt and gratitude, between fear and the promise of a better future; it's like navigating this weird sea of emotions that I can't even begin to articulate.
But before I go crazy and flash back to bad times, I try to remember that today, the sea is calm. And for that, I am truly thankful.
Be grateful and thankful for today. Happy Thanksgiving to you and yours.
For the moms out there, have you ever thought, "wow, how did we get here?" To this age, so quickly. That's where I was about 10 days ago as we walked up to Josh's middle school for his 6th grade open house.
Wow, how did we get here already? My palms were sweaty. I was anxious and impatient, which anyone who knows me will tell you happens when I'm nervous and panicked. For us, this is the big time. He's our oldest and this is all new. Terribly new.
Fast-forward to today. Josh just completed his first full week of middle school and is now a seasoned pro; we are all adjusting pretty well, I think.
And now that we're here, we're enjoying this part of it all. The part where he can enjoy this new, more grown-up version of school. There are no extra doctor appointments and there's (at least temporarily) no worry. Don't worry, that will come again before we know it. But right now, it's so nice. So normal.
We love that he has good friends, including one down the street to ride bikes with. Baseball is starting up again and, after a brief respite from All-Star season, he's hitting the cages again. He's even now talking on the phone and texting with friends. When did this happen? Josh is growing up ... and fast.
Not unlike the other boys his age, I feel like he's literally growing before my eyes. Some have told me that I won't recognize him in 4-6 months; that the changes will be amazing and quick.
I hope it doesn't happen too quickly though. I'm really starting to enjoy this season - no CHD stress; only homework, juggling schedules and, honestly, a great relationship with a great kid.
I realize that I don't say that enough: plain and simple, Josh is a great kid. And he's mine. I love that he texts me to tell me the little things. It makes my heart overflow to know that despite some of his preteen angst, we're still just as important to him as he is to us.
In these moments, I think back to close to 11 years ago when we didn't know if we'd have these points in time. And so, despite the panic and worry about middle school, I am excited. I am choosing not to worry about what lies ahead for his heart.
Instead, I want to live in the present. I can't wait to see what comes with it: the challenges, the hormones (yes, we know they're coming!) and the precious moments, because in a flash, they'll be gone.
Don't Tell Me...
Don't tell me not to worry.
Don't tell me it's going to be OK.
Don't tell me to get used to it.
Don't tell me it will be over soon.
Don't tell me he was "chosen" because he can handle it.
Don't tell me that God has a plan.
Don't tell me that he's strong -- I KNOW THAT.
Don't tell me we live with the hand we are dealt.
Don't tell me it's fair; it's not.
Don't tell me what I want to hear.
Don't tell me that someday it will be different.
Don't tell me you're sorry.
Don't tell me to be strong; you have no idea how strong I really am.
Don't tell me not to be bitter.
Don't tell me not to be angry.
Don't tell me not to be scared.
Don't tell me to just trust the doctors.
Don't tell me anything.
Here's what I'll tell you. Life isn't fair. Josh doesn't deserve this. He shouldn't have to be strong. He shouldn't have to fight. He shouldn't have had his sternum cracked open three times by the age of 4.
Just be honest. Tell me you don't know what to say. Tell me that if I need you, you'll be here. Tell me you love me. You love him. Let me cry to you when Josh is fast asleep. Let me scream. Let me break something. Because, wow -- I really want to break something.
Josh's next MRI is early next week and all I feel is anger, bitterness, sadness and fear. We continuously float in purgatory. What will it tell us? Is it now? Three months? Six months? A year?
Is it time to revisit waiting rooms and the ICU, waiting for our child to finally wake up? When we have to explain the pain and hug away the fear. When time stands still. When I live in the present, but am also transported back to his birth and each surgery thereafter -- nightmares branded on my brain.
Don't tell me it gets easier; it doesn't.
People Are Change
I recently sent a note to my friends at the American Heart Association-Tampa Bay because I wanted them to know how much the "real" people affected by heart defects and disease love and appreciate the work they are doing -- both on a local level and nationally.
I did it because, at the end of the day, I'm no one special, really.
Yes, I am a mom. A wife. A professional. And these are all important things to "my people." But in the grand scheme of making an impact, I fall short. And that's OK.
But these people are special. They work tirelessly for real change. Change that has made an actual life or death difference for our family.
They are working for research funding. For mainstream education. For better testing. They are working to save lives.
I'm sure there are many tough days for them -- when people tell them "no" or that they are asking too much. Or maybe people just don't think it's worth their time. I'm sure they get frustrated because they are so passionate about what they are doing that they can't possibly fathom why others don't feel the same way.
People ask me how and when I make the time for a "cause." But in my mind, this isn't just a cause. This is as important as the air I breathe or the food I eat; this is my son and his life. Advocating for them IS advocating for Josh. How could I not help a group that has already provided funding to make sure he has a future? How could I not do everything in my power to make sure his life -- and others -- is as bright as it can possibly be?
Heart disease does not discriminate. Surely someone in your life has been affected. It doesn't have to be your child -- and I hope with all that I am that it is NEVER your child. But it could very easily be a parent, a sibling, a grandparent.
I know we all have our passions and things that move us. Maybe you have a different cause ... and that's OK too. Just remember that the troops on the ground, advocating for whatever it may be, are working hard, challenging the status quo and raising funds for a better future.
Consider donating a dollar the next time you see a child's face in your local Subway or maybe a few bucks at the grocery store checkout line for those kids you'll never know. You are affecting change. And then you are no longer no one.
About Josh's Mom
By day, Stephanie is in marketing; by night and all other times in between, she's a mom and wife, and highly passionate voice for CHD fundraising and research.